Tuesday, January 31, 2012

Not Accounted For By General Developmental Delays: In DSM-5 Era Life for Autism's Invisible Vast Majority Is About To Get Much Harder

DSM-5 Autism Spectrum Disorder Will Exclude

Autism's Vast Majority Of Intellectually Disabled

While the New York Times, the CBC and other mainstream media giants debate the DSM5's potential exclusion of high functioning autistic persons from autism diagnosis barely a whisper is heard about the express exclusion of autism's vast majority of intellectually disabled. The exclusion of the intellectually disabled from the DSM5's New Autism Spectrum Disorder is not a potential effect, it is the express and intended effect of the language of mandatory criterion "A" as recently confessed by Dr. Catherine Lord.

"Autism Spectrum Disorder

Must meet criteria A, B, C, and D:

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:"

Dr. Lord made it clear in her interview with the NYT that the APA's primary means of addressing the autism epidemic wasn't by removing high functioning autism from the DSM5 for that matter by conducting research into the environmental causes of autism. The APA will challenge the autism epidemic by redefining autism's vast majority of intellectually disabled out of the New Autism Spectrum Disorder:

"Catherine Lord, the director of the Institute for Brain Development at NewYork-Presbyterian Hospital, and a member of the committee overseeing the [DSM-5 autism] revisions, said that the goal was to ensure that autism was not used as a “fallback diagnosis” for children whose primary trait might be, for instance, an intellectual disability or aggression." [Bracketed terms added for context - HLD]

Exclusion Criteria - Not Accounted For By General Developmental Delays

Dr. Lord's confession is confirmed by the words "not accounted for by general developmental delays. The "not accounted for by" is recognized as an exclusion criteria formula used in the current DSM-IV. It is not controversial or contentious (particularly given Dr. Lord's confession) to read those words, as used in the DSM-5, as excluding autism diagnoses in cases involving intellectual disability or as it is also known in the DSM-5: A00, Intellectual Developmental Disorder.

The mainstream media, led by the NYT, is obsessed with the very high functioning persons at the barely autistic end of the current autism spectrum. Autism researchers also focus on this point. Very few display any interest in those most severely affected by autism. Instead of addressing the many serious and harmful effects confronting those on the autism spectrum who are intellectually disabled the APA simply redefines autism ... and defines away the most serious problems currently associated with autism as illustrated in this article on wsiltv.com:

"Working with young autistic children is key to helping them become more functional in society.

"They have difficulties interacting with people with their social communication," explains Kirsten Schaper, the Autism Center Clinic Director in Carbondale.

The Autism Center at Southern Illinois University works with about 16 autistic kids a semester, far less than the number of people that come seeking treatment.

"I'd say 90 percent of the referrals to the center do not have autism," says Schaper.

Schaper says mis-diagnosis of autism is rampant in the U.S., partly because the criteria to diagnose the disorder are vague and subjective.

"We do have a lot of referrals for kids for challenging behaviors, tantruming, head-banging, aggression, self-injury, but these are not characteristics of autism spectrum disorder," Schaper explains.

Now a group of autism experts are tightening the criteria for identifying the disorder by stating specific characteristics to look for. Some parents fear their child, who has mild symptoms that were diagnosed as autism, will no longer get treatment under the new rules. But Schaper says the new criteria should, actually, better help those kids.

"Kids who have maybe an intellectual disability, or a language disorder, or maybe a behavior disorder, rather than autism, these kids will not be identified as having autism, and hopefully get the correct diagnosis, and therefore the correct treatment for whatever disorder they're having." [Bold Emphasis Added - HLD]

Hopefully get the correct correct diagnosis, and therefore the correct treatment for whatever disorder they're having? NONSENSE. The APA is changing the rules so psychiatrists, psychologists and other health care professionals can ignore the most serious cases of autism and dump autism's vast majority in the invisible category ... now to be known as Intellectual Developmental Disorder. In the US where more and more states are requiring insurers to provide coverage for autism the financial hit they experience will now be minimal ... a permanent gift from the American Psychiatric Association.

Frankly, as a father of a 16 year old son with autistic disorder and profound developmental delays, my trust in the psychiatry profession is declining rapidly with each passing day. Life will be easier for the members of this profession who will now address the autism challenge by ignoring the most difficult cases. For autism's vast majority of intellectually disabled though, they will now be even more invisible, more forgotten, more ignored as they are dumped in the Intellectual Disabled Development bin. Life for autism's vast majority is about to get much, much harder in the era of the DSM-5's New Autism Spectrum Disorder.

4 comments:

Sounds like they are scared to death of the numbers and the lacking in their field to effectively make a difference. Therefore... reduce the numbers. Still not gonna help the problem much. It's still here.

read Thomas Szaas - I say it again: the ultimate indictment of Psychiatry, written more than a half-century ago. If you need further proof, read any med-soc. article on professional organizations - they all exist to forward the interests of their members, not the patients/public.

Individuals are not the point, children are not the point, patients are not the point - and never were, no matter what the press releases say.

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

Facing Autism on Facebook

Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.